Kill the Paps-Episode One, Update Three

“Isn’t it a bit unnerving that doctors call what they do practice?” —George Carlin

We are almost two weeks post infusion #3. We are almost one week from the first scan since beginning Avastin. In other words, this cycle is a big deal.

My J was in town for his break for #3, and I sure did love his face sitting beside me during the infusion.  He is the perfect infusion partner-quiet, mindful, and unshakable.  My favorite introverted extrovert.

The day began with labs, and given the drama of the last infusion, we decided to wait on IV and break out the butterfly.  Seems I am now tagged to lay back for labs….this is what a drama ridden blood pressure will do to you-tagged, noted, flagged.  All went well and off to clinic.

Clinic.  “Wait, that’s high for me.  Can you recheck that?”  Near mirror readings.  It seems I may have developed one of the most common side effects of Avastin, high or elevated blood pressure.  Was told to monitor it over the next few days and report back via email on Monday.  (Further down is an update.)  Released for infusion.

After some celebration by infusion nurses that came to my chair over my scheduled port (Yes, I’ve decided to get a port.), a tag team effort begin to get an IV in that would hold and flush.  Two attempts.  The second landed in the top of my right hand, and it did flush, it did have blood return….but man….was that little baby sore!  After playing with tubing, taping, anchoring and getting my hand and arm positioned on a pillow to relieve some of the discomfort, drugs were up and the “IV hold” dance commenced.  I had the same nurse as infusion #2, so it was nice to see her being so helpful as we worked to complete the infusion and baby the IV.  She told Josh how sweet I was, and I made sure he heard that!  Due to the IV being in the top of a very tender hand, we did have to slow the rate down just a tad more due to burning.  We chatted about the process once a port is in, and let me just shout this-I CAN’T WAIT! My veins are all doing a happy dance, and I know not only will the process be easier on me, but less stressful on the entire infusion day team. Years of anesthesia running through my veins, veins that are just tired….mixed with running a drug that prevents the formation of new capillaries, and I think we are all in agreement….praise hands to the port!  I’ve received so much support on this decision from those in my RRP community who have already walked this road, the spouse, the parent, the son, the daughter, the nurses, the oncology team, friends who have walked the road of regular infusions….I know it’s the right decision!

Infusion ran.  Done.  IV out…time for lunch.  We went back to Ponce City Market and had the wonderful shrimp po-boys again!  Yummy, sweet gulf shrimp!

The rest of the day I spent just being lazy.  We had been so busy while Josh was in for break, we all were happy to just “be” and take in Stranger Things.

Infusion #3 notes:

  • Nausea night of and some the next day.
  • Back pain-this one was new.  It lasted two days, and was more evident at night when in bed.  It was not fun.
  • Elevated blood pressure has not left, but it is staying somewhat consistent.
  • Cough seemed increased first three days and has grown less to be back where it was prior to infusion #3.

So, all in all, I cannot complain about this process.  IV access has been the drama for me, and I haven’t really worried about the blood pressure as that’s an easy fix and will be temporary.

Now, to set the anxiety on the table and walk away from it as I head towards the scan next week.  The scan determines if we proceed to the next cycle of three.  No progress, we cancel port procedure and any further infusions.  We are all so certain we have seen changes, that I know it will be a huge crushing blow if there has been no regression of disease.  I’ve read all the “read this verse”….I’ve listened to all the “listen to this song”….and I have readily admitted how mad I get at God sometimes over this disease and all it has brought.  I’ve also tried to focus on what this disease has brought to me that I cherish-and that’s my RRP community and some of the medical staff along the way.  I really do have this extended family, most of whom I have never met, that gets me…gets all of it.  I wish I could undo the stress this disease has brought to Lee, Josh and Meg….and to my parents.  I guess that’s what I hate the most-what it has done to those around me.  As we sat in church this past weekend, and Passion band was blowing the roof off the building…I kept this thought in my head-oh, how I wish I could sing…a voice that would be used in a mighty way.  That’s my bucket list #1 item.  My heart sings so loudly….and I dream of my voice matching my heart.

So, we march towards next Wednesday…..with fingers, toes, ears crossed.

Kill The Paps-Episode One-Update Two

Well, we are almost two weeks post infusion #2.  Here’s the update on things…Avastin style.

Infusion #2 had drama….pure “look at me” drama.  Things started well….IV slipped in on top of the hand on the first try…praise hands.  Looking back, the next part should have been my “sign” of how things would go, but I was still focused on the one stick. Nurse had to really massage the blood out of the IV for my labs.  She had just finished up, and that familiar “hmm…I’m nauseated, I’m having cold sweats, is the room spinning” came over me-I looked at her and quietly mumbled, “you need to check my blood pressure.”  I believe it was something like 61/34.  Nurse, “I have an emergency in here.”  Legs go up, chair laid down, fluids hung….yep…I remember this….but the last time, it was after seven large trial tubes of blood…this time, it was after three very small routine lab vials.  Several minutes later, we start to see progress and nurses seem less frantic.  I, on the other-hand, have that post BP drop hangover.  Can I just nap now?  Hilarious, but old school nurse was in charge of me this AM and at some point, I still had to get to clinic.  After my vitals assured them I was not headed to the ICU for monitoring, in comes a wheel chair to take me to clinic….yes….I was that patient.

Clinic went well…labs all good….nothing that would prevent me from having next infusion, so back to infusion center.

Well, maybe the drama just prefers the infusion center, but drama showed back up.  After a rather long wait for drug to come up, it was time to hang that little bag and get the day finished.  My veins…well…they had another plan.  IV failed.  Pain when trying to flush, tender to the touch…..I was defeated. Then began the drama to find another vein that met Emory protocol.  Seems that sweet vein right in the crease of your arm is a no go for these drugs.  Thankfully, the nurse thought ahead (because that sweet spot in the crease is where the vein was going to cooperate) and inserted IV just above that crease….this allowed us to appease the protocol eyes for that day.  An hour later, and the show was done.

What did I notice this infusion?  No headache this time, but I was fatigued for two days.  It’s not a sleepy sensation, just your body is tired.  I’ve still not had any mucous plugs for about three weeks now.  Coughing is down….whether it’s related or not…unsure…but it’s down.  Cleaning my inner cannula is down as well….maybe two or three times a day.  I noticed some very slight air sneaking out around stoma site, and that was new….and I know there were some papilloma in that area…could shrinkage be allowing occasional air leak? Little things, big questions.

I head back in next week for #3, followed by first treatment scan two weeks later.  If not for the IV issues and BP drama, it’s really been a fairly easy process.  Infusion staff and my oncology team are wanting me to consider a PORT.  The order is in, and it is up to me now.  Seems like a big step given the frequency intervals of my infusions, but one I know I should at least consider.  I worry about the PORT infection risk, but I also know if I’m on this drug longterm, plus lab draws, scan contrast IV’s, and IV’s needed for an occasional procedure to keep airway open….maybe I get/will get stuck more than I realize.

That’s where we are today.

Today’s Kimism:  None of this is a choice.  No one with born with a chronic condition has made a choice to be sick, to seek healthcare (death or healthcare isn’t a choice)… this era of healthcare being this huge partisan political issue….be kind, have empathy, understand for those in the fight-it’s not a choice.